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tv   Nightline  ABC  November 22, 2012 11:35pm-12:00am PST

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a fight for his own life. it's an inspiring story of pushing the limits. spanning seven years and thousands of miles. how the power of friendship turned an impossible cross country dream into reality. plus, rolling on. darius' strength of spirit -- >> let's get this party started! >> has helped raise millions for the cure. and now his family, doctors and friends are determined to make one very special wish come true. from the global resources of abc news, with terry moran, cynthia mcfadden and bill weir in new york city, this is a special edition of "nightline," "giving thanks: darius' dream tour." >> good evening and happy thanksgiving, i'm cynthia mcfadden. on this day dedicated to giving thanks, we want to introduce you to a young man whose story is a
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testament to the power of friendship and the strength of the spirit. his name is darius weems and his life has been an incredible and some might say nearly impossible journey. he lives each day with a devastating disease, duchenne muscular dystrophy, yet he's one of the most positive and inspiring people we've ever met. we're heading off on an unexpected adventure. it's hard to believe all of this started as a road trip between friends. >> it's hay hem. kind of like beatle mania. >> reporter: darius goes beatle. but seven years and many, many miles later, it's turned into this. a lesson about life from a guy who knows first hand how precious every day is. and in rural south china, maine, they are very happy he is here. it isn't the fab four bringing
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down the house on this rainy tuesday, but a fella named darius weems. here you are, a kid, from athens, georgia, in a wheelchair, in the middle of maine, right? >> yeah. >> reporter: and they are going out of their minds. >> from time to time, i have to pinch myself, come back to reality. these kids are going, like, mayhem. i thought they were going to pick the van up or something. >> reporter: darius invited us to spend a couple of days on his "believe" tour, where he visits schools around the country, inspiring kids to believe, if he can achieve his dream, so can they. >> darius! darius! >> reporter: darius suffers from a genetic disorder that affects one in 3,500 boys around the world. legs and arms recede and eventually so do the muscles that surround the heart.
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in the u.s., the average duchenne sufferer dies by 25. >> let's get this party started! >> reporter: the disease killed his older brother at 19. darius is 22 and he is resolved to fight with everything he's got. >> my brother, when his life kind of slowed down and seeing him leave the world, kind of changed my life. >> reporter: for him, it's been slow but steady. he could walk when he was a kid, but around age 9, he transitioned to a walker. a wheelchair came at age 12. now, he can only wiggle his fingers and feet. ♪ i got a heart full of pain >> reporter: but his mouth works just fine. he spends a lot of his time writing rap. ♪ it's all about giving ♪ this is my life ♪ can't nobody stop me from living ♪ >> reporter: we first met darius in 2007 when my then "nightline" colleague martin bashir spent
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some time with him. martin had a particular interest in darius and his disease. >> my brother died when he was 29. your brother died when he was 19. do you worry at all about the future? >> the more that you appreciate your life, the more that you get out of it. >> reporter: logan smalley knew darius was a special kid. he'd been a counselor at a camp darius' brother attended. before mario died, he asked logan to watch over his little brother. tell me when it first occurred to you that maybe darius should go west. >> yeah. it was darius, his mom and myself. we were watching mtv. and we jokingly said, you know, we should get your wheelchair customized on mtv. 30 seconds passed and we said, whoa, this is a real story. we should really film this thing and make a movie to raise awareness. >> reporter: so, at 15, darius took an extraordinary journey across america with logan and a bunch of guys.
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>> i mean, i'm just like a regular person. i'm just the same as other people. i got talents. >> reporter: the journey became a film. "darius goes west." it was the first time darius had ever left his hometown of athens, georgia. how did he talk your mother into it? >> oh, it was hard. she didn't want to let me go. >> reporter: but i mean, it was a pretty crazy idea, if you think about it. >> most of the weus was still i our teens. >> reporter: they traveled to the grand canyon. >> king of the world. >> reporter: where the view brought tears to his eyes. and to the ocean. where darius stood up for the first time in almost four years. >> yeah! >> reporter: mtv never did pimp his wheelchair, but the trip was a success. >> there you go. >> reporter: the journey turned
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out to be one about gratitude, about giving thanks, about giving back. and about two young men who couldn't be more different on the outside or more alike on the inside. what do you think you've given logan? >> i think we give each other things, like, with him, actually taking on the goal of watching over me when my brother passed away. logan's seen me grow up from when i was 5 years old to the man that i am now, so, i definitely think he's proud of what i have became. >> reporter: so, i asked darius what he felt he had given you. what you have given him? >> darius and i have a mutual respect for each other, i think. it's some strange mixture of brotherhood, parenthood, old married couple, best friends, like, our relationship runs the gamut and i love him more than anybody. and we just have so much fun together. and it feels really good,
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because it feels like we are making a difference. >> reporter: and that is really the strength of the film. the power of their friendship, the power of their belief in one another. darius has even written a song about it. it's called "believe." ♪ i believe >> reporter: through the years, darius and logan have also given each other a lot of laughs. one of the most poignant moments in the film happens by accident. visiting the san francisco zoo, darius' pals dare him to eat a spoonful of wasabi, noboknown t super hot. but something he's never heard of before and that he clearly can't pronounce. >> they bet me, like, ten dollars, to get this gosabi sauce. i can't say it. goslabi? >> reporter: he takes the challenge. >> all right. >> oh, my god.
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>> reporter: when i saw the film and that scene starts to play out, i was very unhappy that they were having you do that. i felt like they were picking on you. and then, as i watched it unfold, i realized that they were treating you just like everybody else. >> when we was filming, there was a lady, like, by us and they sought they was picking on me and stuff like that, so, i think it shows a good message and just treating me like others. >> reporter: he's just one of the guys and it's that scene more than any other that captivates the kids in the school they travel to. it's become a popular way to raise money for medical research for duchenne. nothing more fun for a group of high school students than having their own goslabi challenge. darius smiles every time. so far, darius has raised more than $2 million for the cause. much of it to the sound of laughter. so, when we saw you in the
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movie, we saw kind of what life was like. you are physically a little bit worse than that? >> well, i would say, like, physically, i'm still able to do most of the stuff that i did during the making of the movie. over the years i kind of develop, like, a heart problem. i had to go on a low sodium diet to keep my heart functioning right, so -- i'm still doing pretty good. >> reporter: and we're getting close to a cure. >> yeah, definitely. actually, me myself, i'm in a clinical trial at johns hopkins and that is, i think, in my lifetime, i would still be alive or being able to be in a clinical trial. >> reporter: when we come back, we're with darius at that hospital. could a dose of vie yagra reall save his life? [ male announcer ] this is the age of knowing what you're made of.
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>> announcer: this special edition of "nightline," "giving thank thanks: darius' dream tour" tonights. >> reporter: darius weems is on a mission. but even though he's only 22, it's a race against time. he's determined to help solve the riddle of duchenne muscular disroe if i. for himself and for all of those young men who have it. the disease took his own brother, mario, at 19. >> ready? >> reporter: so, when he's not touring the country making music and raising money for research, he often comes here, to the kennedy krieger institute in baltimore. >> the day is just getting started. got to get my blood drawn and i got to do an mri. story of my life. >> reporter: tell me about your physical self at this point. >> in my situation, i would say i'm blessed, you know, being able to just live my life and
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live my dream, i'm appreciative, you know, i'm blessed. >> reporter: but there's a lot you can't dot for yourself. you need help and support. >> yeah, you know, so -- >> reporter: like simple things. >> like, i can still brush my teeth and stuff like that. >> reporter: there may come a day when you can't. >> yeah, so, i really don't look at life like that. as long as i'm here and being able to motivate people and being strong, hey, i'm living my life to the fullest. >> darius? >> reporter: his hope is placed largely on this woman, dr. kathryn wagner. darius is part of a clinical trial she's helped spearhead, an experiment using, of all things, the active ingredient in viagra. the drug is called sildenafil. it's supposed to help stimulate his deteriorating muscles. >> most of the focus in duchenne has been on the children, which is incredibly important. but sometimes it feels it is a
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community that once the boys have lost the ability to walk that we've forgotten about them. >> reporter: dr. wagner hopes her research will help those with duchenne live longer and healthier. you know this disease is going to take your life. >> i would definitely say knowing that kind of makes me stronger. you know, it's surreal, you know? i'm going to, you know, be lost by this one day. so, that's why i always start off saying just being appreciative. >> reporter: do you ever get down? >> oh, you know, in life, everybody gets down, but you know, i think about the situation that's at hand, trying to cure this disease and trying to carry on my brother legacy. >> reporter: so, you don't count the days, you don't do the math, you don't say, okay, i'm now 22 years old and that's already beaten the odds? >> i would say sometimes you do kind of think of it like that, but then again, you know, just
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because i got a fatal disease doesn't mean any doctor can put any amount of time on my life, you know, everybody's going to die one day. so, i can try to live life one day at a time. >> reporter: but despite his optimism, a few months later, at a routine cardiology checkup, doctors discover excess fluid has been building up around his heart. darius spends his 23rd birthday in the hospital. and news that day brings tears to his eyes. when we come back.
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thank y'all again for having us and thank you for being such a kind, incredible group. >> logan smalley has been watching over his friend darius weems since darius was just a little boy. he wants to give him something special for his 23rd birthday. a birthday many thought he would never live to celebrate. >> if you could wake up and get anything for your birthday, what would it be? >> reporter: darius had just one wish. >> on my birthday, i want to have a single out. you know what i mean? the song that i'm working on. ♪ age 9 walking with a tennis ball ♪ >> reporter: so, logan set out to make it happen. >> we want to host an enormous online surprise party and make him a rap star overnight. >> reporter: they made a secret
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youtube video, scoping out their plan. >> and we need all of you to help. >> reporter: as it turns out, darius was in the hospital on his birthday. well, the tears in his eyes are because his song, "thank you for 23," had remarkably made its way to number 35 on itunes. a wish come true for a young man who has dedicated himself to a cause. traveling 300,000 miles in the last decade, raising $2 million for research and inspiring tens of thousands of kids. >> happy thanksgiving. >> reporter: this year for thanksgiving, like many of us, darius gathered with his family, including his mother, jamie. >> i'm proud of him. at first he couldn't rap. used to get on my nerves. but rapping now -- he's got a lot better. >> reporter: a few pals from his epic trip out west were there, too. daniel, who drove, and jason, the only one who could lift
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darius. >> people say, how long have you worked with darius and i told the crowd, what, two weeks ago, that i never worked with darius a day in my life. it's just living. >> not a great cook but i'm a good eater, so -- >> reporter: and as the group set about deep frying a turkey -- >> gobble. >> reporter: to celebrate and gift thanks, they counted their blessings. the things they have and for the things they've been able to give. >> i came a long way, you know, from when we first started this movie to now, you know? whoever knew that i would still be healthy? still living? oh, snap! every day i get older, i'm thankful for that. i go there things, you know? everybody does. but life ain't that hard. >> one fried turkey coming up. >> reporter: darius sees the good, no matter how rough the road. what do you hope people say about you when you're gone, darius? >> i definitely want people to see me as a strong person, no
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matter what i been through, all the obstacles. i want people to see me as a fighter and said i live my life to the fullest, no matter what. >> reporter: no doubt they will. ♪ i know i ain't got a lot >> what an inspiration. darius weems, living every day to the fullest. to find out more about darius' story, go to abcnews.com. that is our program tonight. thank you for watching and happy thanksgiving. "good morning america," right here in the morning. good night, everybody. jimmy kimmel is next. tonight on "jimmy kimmel live" -- >> in new york, they line up for gas. in l.a., we line up for vampires. >> daniel craig. >> now all of a sudden team edward and jacob have been dumped for team daniel, i think.

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